The More You Know?

20Dec09

Nearly every discussion on how to manage the risk for BRCA mutation carriers goes back to the preventive surgeries: mastectomy and oophorectomy. But while these surgeries are very effective for reducing risk, they are not without their own risks. Mastectomy can affect sexuality and body image. To me, these risks seem manageable. I feel they are highly dependent on the current role breasts play in my sexuality and how I feel about the mastectomy beforehand. On the other, the risks of oophorectomy scare me. I heard other people talking about this on FORCE before and I didn’t understand what they meant about “worried about effect on quality of life.” After reading some medical literature, I have a better appreciation of the risks involved.

According to Shuster’s extensive literature review, oophorectomy is associated with increased risk for:

  • Overall mortality
  • Cardiovascular disease
  • Dementia
  • Parkinson’s disease
  • Depression and anxiety
  • Osteoporosis
  • Impaired sexual function

That is indeed a scary list. For me, one the scariest items is dementia. How would I feel about having successfully prevented early onset breast cancer but end up with early onset dementia instead? I can’t help but say right now: I’d prefer breast cancer than dementia. (What about “chemo brain” though? Hmmm….) Of course none of the other risks are appealing either. I know that osteoporosis, as dull as it sounds, is something I should be more concerned about. I am lactose-intolerant so I definitely don’t get much calcium from milk. (Am I ever going to seriously think about calcium supplements?) Oh, and what about “overall mortality”?? Doesn’t that one get right to the heart of the matter: are some women trading early death from breast cancer with early death from oophorectomy?

Well, despite all the risks of oophorectomy, doctors still consider that the breast cancer/ovarian cancer risk reduction outweighs its harmful risks for BRCA carriers. This is especially true for BRCA1 carriers who have a higher risk of ovarian cancer. But there is something else to consider here: at what age is oophorectomy worth it?

The risks of oophorectomy generally increase the younger the it is done. The cause for all this increase in risk is lack of estrogen. (But cutting off our source of estrogen is also what reduces the risk for breast cancer!) Estrogen pumping through us for most of our lives also protects us from all sorts of degenerative effects of aging. Cutting it off before our natural menopause is allows these types of degenerative effects to start earlier.

I spent the last couple hours searching for a study which discusses the optimal time for oophorectomy in BRCA mutation carriers and still haven’t found one. (Anyone else?) I found many studies which compared the negative effects of oophorectomy from ages 40 to 60, but none that talked about explicitly early cases. I get the sense this is uncharted territory. But I get the impression there are many BRCA carriers out there getting oophorectomy at ages earlier than 40. Surely someone’s monitoring them? Is there a position in the medical community about prophylactic oophorectomy in women younger than 40?

I still haven’t gone through the statistics of the increased harmful risks of oophorectomy. I am hoping to get an article dealing primarily with young women first. Because I’d like to see first-hand what are the difference in risks over time. Right now, I feel concerned over what information is available to young BRCA+ women. I know that the risks of BRCA1 and BRCA2 are different, and I know that even the risks between the mutation positions are different. Now, I better appreciate the long-term risks of the preventive surgery. (By the way, breasts produce estrogen too!) And I can see how complicated these issues are. It may seems over-anxious of me to be researching all this before I even have test results, but I feel that it’s going to take quite a bit of time before I fully understand all the issues I must consider. (Would I even reconsider getting tested with the more information I have?) I think I need this head-start!

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5 Responses to “The More You Know?”

  1. 1 Anonymous

    Hi
    This blog really hit home for me. My mother has just been diagnosed with the BRAC2 gene and now I have to make a decison to get tested. My mother has breast cancer, my aunt died of breast cancer at age 44 and my great grandmother died at age 40 of breast cancer. I initially thought I would get tested and just do the two surgeries and live with a lesser fear of getting cancer. But now when I do my research I am so scared of both the surgeries and especially the removal of my ovaries. At my breast health centre here in Ottawa they said that most of the BRACA carriers will remove their ovaries before the masectomy. I thought that I would do this without a doubt.
    I cannot believe the risks involved and I am terrified. My mother also has Alzheimers, and it is a terrible illness. I am begining to think that I don’t even want to know if I am a carrier as the anxiety and fear surrounding a positive result will be overwhelming for me. I don’t think I can go through either one of these surgeries so why do I need to know??? They are following me and my sisters at the high risk clinic anyway. The one thing I feel guilty about and responsible for is my 3 beautiful daughters. I feel so overwhelmed and sad about this, and I am so scared to get tested. I just don’t know what I will do with the information.
    Are you getting tested?

  2. 2 alyssum

    I am definitely getting tested. I got a referral from my doctor back in early December. I am calling back the cancer agency this week (again) to follow up on it. But seeing how the system works, it might take a long time before I get the results. Although the day I wrote this article I was feeling pretty down, I know in my heart that testing is the best thing for me.

    I also have to say I feel a little better since I wrote this article. (Granted, my feelings on this topic go up and down everyday.) There are times that the more I read, the more I am *comforted* by the research. Here’s something I saw recently. Many of the ovarian cancer cases in BRCA women appear to start in the fallopian tubes. While researchers do not currently recommend only taking out the fallopian tubes for BRCA women, there is interest in researching this further. If taking out your ovaries before menopause is what is preventing you from doing the bilateral salpingo-oophorectomy, then maybe you can talk to your doctor about just starting with the fallopian tubes first. Another thing is that the risks of oophorectomy are highly correlated with age. You are already 44, so you do not have as much risk of side effects as a 30 or 35yo. One more thing, BRCA2 mutations (and other genes within families) have different risks for ovarian cancer (https://brca2blog.wordpress.com/2009/12/20/risk-diversity/). Also, for your daughters, there is a lot of hope for them. A lot of progress is being made in genetics research and researchers are hoping that there will be new options, so that mastectomies and oophorectomies will *not* be the standard of care in the future.

    Although I implied in this article that knowing more isn’t good, I actually think now that knowing more is helping me. But again, there are ups and downs in this process, so I can understand your fears right now.

    • 3 Anonymous

      Hi Alyssum
      Thanks for your reply. I am up and down about everything as well. I don’t even know if I am positive or negative yet, but feel like I need to know ahead of time whether I can handle doing one or both of these surgeries. My family doctor told me to just take one step at a time and that someitmes not knowing about the mutation is worse. At least when we know we can be pro-active. My sisters and I have always known that we are at high risk, and have always worried about getting breast cancer.
      I am happy for you that you have made the decision to get tested. How long did that take you? You are very brave and strong. I have also requested a referral to see a genetic counsellor as the first step. My sisters and I thought we should all go together.
      You are so knowledgable on all this, it seems like you have been doing alot of research. I am still trying to come to terms with everything and I hope I feel strong enough to go through with the testing, as I know I can’t stick my head in the sand forever.
      Thanks for helping me today.

      • 4 alyssum

        It’s funny you ask how long it took me to decide to get tested. I haven’t even see the genetic counsellor yet, but I am very confident I will get tested. The moment that I realized that I could get tested for BRCA, I wanted to know. It’s partly my personality. I am a computer geek and researcher. I love data and facts. And I have faith in scientific progress. I really believe knowing this information is going to help me (and others) in the end.

        Also, after learning more on my own, I see that testing only has a chance of bringing good news for me. My family history has meant my risk is already considered very high. If I test positive, it is just confirmation of my high risk. But if I test negative, then I should have more or less normal risk (because my mother already tested positive). Actually, I see you are in the similar situation too with your family history. Maybe if you look at testing this way, it won’t seem so intimidating. But I will admit that I was much more concerned over my own risk when my mother tested positive for BRCA2 than when she told me she had breast cancer. That was quite irrational, but I know it was due to my ignorance of hereditary cancer.

        Seeing a genetic counsellor is a great first step for us. By the way, I just got word back from the cancer agency today. I should be able to schedule an genetic counselling appointment soon. So, I will definitely be blogging more about this testing process. Good luck in your journey as well!

  3. 5 Mel

    I realize I am replying far long after your original post, but just to share this study (in case it is helpful): http://www.womenscollegehospital.ca/news-and-events/connect/Preventive-oophorectomy-reduces-risk-of-death-by-77-per-cent-for-women-with-BRCA-gene-mutation

    In this study, the researchers conclude that the optimal age for the preventative oophorectomy to be at age 35.


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